Nate's Diagnosis

As is evidenced by the virtual tumbleweeds, blogging has been far from our minds lately. However, we recently received a diagnosis for what Nate has. We started a new blog addressing Nate's specific condition and it will cover his diseases, the organization that is working to cure it and hopefully, the non-profit we will set up to assist in the cure and for Nate's needs.

Check it out here:

www.smardypants.blogspot.com

Nate!

9 Days

Nate loves to sit on the balcony and watch the cars go by our apartment. I think what Nate likes most about them is that they move. Something he does not.


Every night we have a routine. For awhile there Annie and I were so tired we would do all the maintenance things we needed to do to Nate then put him in bed. Venting his tube, changing his diaper, getting his night time meal ready, suction his trach, attach his oxygen monitor, plug in his vent and humidifier and put his hand splint on. We decided it would be better to make bed time more happy.

Nate has a friend. He's called "Bunny" and while we don't trust him Nate seems to like him, a lot. More than us actually. He got him during the pneumonia stay of 2011 and they've been great friends ever since. After putting him in bed we'll give him Bunny and Nate will go bananas kissing him and hugging him.


Before that though we sing a song, usually a primary hymn. Nate's favorite seems to be Give Said the Little Stream. After that one of us says a prayer. Recently Nate has begun folding his arms when we start to pray. Tonight, as soon as I said: "Nate, its night night time", he folded his arms ready for the prayer. This is Nate trying to fold his arms with his hand splint on:



Oh, and here is Nate being dorbes.

Near Life Experience

In the time since the last entry Nate has come close to death taken to the hospital where he received a tracheostomy was sent home, almost died, went back to the hospital, came home again had another event, went back to the hospital and is finally home again today. I'm not going to bother to check the grammar in that sentence.

Nathaniel has been a real trooper though. He has remained cheerful albeit smelly. There are all sorts of things that come with a trach that they don't tell you before hand. Nate needs an over night nurse as long as he has the trach. The trach can get plugged and suffocate him, we always need to carry a suction with us to suction gross liquids from his trach and his trach is attached with cloth wrapped around his neck, so its not too sophisticated and can get gross.

He seems to be happier then ever though. This is Nate being floppy. Lately he thinks its really fun to fall over.

Much Needed Haircut

Do you notice something different about our apartment....looking closely. I'll give you a hint, look for a ridiculous amount of hair.

That's right, there's a Nate in it now!




Annie and I held a press conference this weekend to announce that Nate was finally home. It is wonderful but not without its hiccups. Most frustrating of them being his breathing machine he is supposed to sleep with at night.

The problem is that it doesn't work. So that's a negative. So it actually hinders Nate's breathing and causes his oxygen levels to drop. His alarms then go off. This happens all night, about every 15-30 minutes and we have to get up and get his oxygen levels back up.

On the bright side Nate got a haircut. I feel like his hair is better untamed and wild, much like Nate but we have to keep that mullet in check.

Before


After...well during really.



Still before but its a great pic of Nate when he was in his wheel chair. Something about that chair that made him so happy.

Professor X

Whats that you say? There is life outside the hospital? Well, Nate finally got a glimpse of that this last week. Nathaniel has become depressed. He is clingy and cries a lot but we've noticed that if he can be engaged or leave his room him immediately brightens up. We've taken every chance we can get put Nate in his wheelchair and wheel him around. At least once a day they even let us take him outside.

Nate Loves his wheelchair. You don't even have to take him anywhere all the time. Sometimes he just brightens up if you sit him in it. He loves to put his arms up on the arm rests and practice his best Emperor Palpatine.

Still in the Hospital

Nathaniel is still a resident of Valley Med hospital. Its not the most desirable real estate but its not the worst. Nate had been intubated with a breathing tube for 3 1/2 weeks, including the brief time he was off of it and then had to be put back on.

Last Wednesday they took out the breathing tube and replaced it with a mask that constantly pushes air into his face. He doesn't like it. Thankfully on Monday the doctors started taking the mask off for the day and then putting it back on at night. This happens for 2 reasons.

1. They are afraid of wearing him out by having him breathing on his own.
2. Nate is suffering some pretty hard withdrawals from all the drugs he was on for the 3 1/2 weeks of intubation.

Its scary to see your 1 year-old go through this process and its an added headache. Is was in decent spirits today. The doctor is optimistic that we'll be out by the time he goes to college.

He has the sponges on a stick that are used for teeth and mouth cleaning. Turns out he loves them. He has replaced his old addiction for drugs with a new addiction for mouth cleaning sponges on a stick.



This was Nate on Monday, his first day with the mask off. It was bliss